Autism, hope, help and useless governments

Yesterday, there was a piece in the news about a woman who dropped her 19 year old autistic son with the government and left. Oh how I feel for her! What a heartbreaking decision that must have been. She had no hope left. And no resources to give her any respite from it. I suppose she clings to hope that this will be a better situation for all of them. I am praying for her. And all the parents and caregivers who are at the end of their ropes. I'm voting for the NDP, because they promise more help than anyone else. And I'm writing to everyone who might be able to help.

Here in BC, the situation isn't much better once your child turns 19. There's no more autism funding. There's $905/mo in disability welfare, that you can use as you see fit (this is assuming the 19 year old is unable to manage his or her own money at all, like in the case above where he functions at the level of a two year old). Depending on the person's needs, that may not cover even a quarter of what is needed. It costs me and the government combined (my own cash + autism funding + respite + distance ed school disability grant) about $3500/mo for Crackle - my most seriously disabled child. When he turns 19, his needs will not change. But we will lose all but $905/mo of his funding. Here's hoping his needs change considerably by then!

Crackle has been particularly loud for a few weeks. The kind of loud that makes my eardrums throb by days end. Not exaggerating. Days like these are the ones that make me truly understand how someone could lose it and say "Enough. I cannot do this any more". But I have hope. And he's only 7. And he likes to cuddle with me in the morning. And he's learned to kiss me. Hugs me when I ask. And even when he's screaming, he's happy. I think.

Yesterday, the woman who spends 6 hours a day here quit. Gave 30 days notice. Eep. The day before, my strata voted for a $20,000 levy from each unit so that we can do major renovations. That's right. I have to come up with Twenty Thousand Dollars. By June 3. The whole summer will be filled with renovation noise. Crackle loses it when the gardener mows the laws. Or when the vacuum is running. So, we will have to go spend time in the forest. But... the SEA quit. EEP. And to top it all off, my ultrasound revealed that my already serious gallstone problem has developed into intrahepatic dilatation (the stones may be backing up into my liver) and so I'll probably need surgery sooner rather than later (or never, as I had planned). And now there's no one to help.

Furthermore, I promised Snap a trip to VidCon in August (already mostly paid for - non-refundable) and I'm going to the Son-Rise Maximum Impact class in October (already half paid for - non-refundable, but possibly delay-able).

So, if you're the praying sort, I could use a few prayers. I don't think that God just drops in loads of cash, but maybe God could nudge some help my way? Hint hint, Old Dude In the Sky! Or Pretty Lady in the Forest. Whatever you're calling yourself this week.

I still have my hope. But I'm rapidly running out of patience. :)

x-posted to Feminist Christian Socialist

Small miracles

[some how this didn't get posted when I meant to, so you get a two-fer today]

Last weekend at church, the lovely and talented Rev. Erin said something that has really stuck with me (yes, Erin, some of us do listen. :)) She was talking about the urgency of sharing the Good News. We all know the kind of people who are sure that you are going to hell if you don't accept Jesus into your heart and be born again. Like literal actual factual burning in hell. Like my friend Erin, I don't much believe in an afterlife hell. Hell is here on earth. And the Good News is that it doesn't have to be that way if we just love one another unconditionally.

How's that for hope? Starving? Don't worry about it, someone will feed you. Sick? No worries, someone will heal you. Too sick to watch your kids? No problem, someone else will. We're not there yet, but we can be. How awesome is that?!

What I'm learning, the hard way, is that those people are out there, willing to help, but most of them aren't actively seeking out people to help. So I'm advertising for them. Not kidding. I have been advertising for people to volunteer in Crackle's playroom, doing Son-Rise therapy with him. And they're coming. Really good quality people made from chocolate covered awesome. They're responding to my ad asking them to come and learn how to play with him in a way that helps him learn. I've got 2 fabulous volunteers right now, I interviewed a new one today [addendum: she's amazing! I love her], and am meeting someone else tomorrow [also freakin' amazing!]. I've had several people come and try and it didn't work out for various reasons. But they tried. and that's truly wonderful.

I have people who are willing to commit to a minimum of 4 hours per week for 6 months. I have one who spends countless hours with them because it's fun, and she loves the amazing little gains. She was screaming with glee yesterday because he said "poop". And because of my amazing volunteers (and one paid worker), my kids are making huge strides. Pop wouldn't even get a diagnosis today, I'm willing to bet. Crackle? Crackle spoke. He. Spoke. I cannot tell you what a miracle that is. That's the kind of miracle Jesus spoke of. The good news that it doesn't have to be that way. He spoke. Oh sure, he just said, "poop" and "Dad" and "hey baby" and "up room". But he's 7. And they told me if he didn't talk by five, he never would.

So those are my miracles. That my kids are recovering (miracle 1) because strangers are volunteering their time to help (miracle 2). And that I found out about it in the first place!

New information

I've had a bit of a hard week. I got some new information on Snap, my beautiful 17 year old daughter. She's got autism, which I knew, but what I didn't know is she also has non-verbal learning disability. I'm massively proud of her, now that I know what she's been facing, and how she's managed to do as well as she has. What's hard is that the gist of everything I've read is, "Parenting: Luna is doing it wrong". I know I can't really get too mad at myself. I've been doing the best I can with the information I had. But I'm also having a lot of moments of what if. What if I'd pushed harder with the pediatrician who told me I was spoiling her, and that her problems were entirely my fault? What if I'd insisted that my doctor refer us to someone else? What if I'd pushed the school harder to get her tested earlier? What if?! She's 17. She's got some of the issues the articles say will happen if she's not handled properly. And of course, she wasn't, because we didn't know. And there seems to be no information about what to do next. The expert advice is seriously lacking. And the information for adults with it is almost non-existent.

I'm getting much better at not worrying about what if. I used to really get hung up on that. But it doesn't help. Doesn't help me. Doesn't help her. And who knows what if, anyway? Maybe not a damn thing would be different. Maybe it'd be different, but not better. Maybe it would be worse. I don't bloody know. So I'm not doing that. As much.

And you know, I'm not giving up on her. Snap is awesome. Clearly. The fact that she's going to graduate from high school with her full diploma, with just the little support that she's gotten (tests in quiet rooms, extended deadlines, extra resource blocks, etc.) shows that she is amazing. And she's planning to go to college. Current plan is Camosun's university transfer course, with a transfer over to UVic's Women's Studies program in a couple of years. SO PROUD. I'm bursting with pride for her.

Doesn't mean she doesn't drive me crazy. She's 17. But I'm understanding her a bit better now, and that is really helping my happiness levels. It's much easier to be happy when I'm not holding on to judgements like "my parenting sucks" or "she's a lazy teenager" or "if she just cared more about X, she'd do Y". Um, nope. Turns out her brain is wired differently. And suddenly, it's easier for me to be happy with her. Isn't that interesting? Nothing about her has changed. And suddenly, I'm happier with her. Because I have new information? Sort of. The new information gave me what I needed to change my beliefs about her. But I could have done that without it. I could have just decided that she was doing her best with what she had, and been a happy camper. And I didn't see that until now. It's really kind of an awesome power to have. I can simply change what I believe about people, and be happy. What would it matter if I were wrong? What if my kid was just lazy and I decided she was doing her best? Would that mean I wouldn't still try to help her best be even better? No. It wouldn't really affect how I'd try to help her. It would only change my attitude toward it.

I'm going to try doing that with some other people in my life. Let's see how that works out!